To parents with pfapa children

I was so grateful to have found this site. To realize there were other parents out there who had been through similar experiences. Felt the helplessness when you hold your child and they are so hot they are burning you. Month after month you dread so bad what you know is coming. Constantly feeling them to see if they are hot even between episodes. Thinking you will be able to handle it better each time,only to panic anew each time. I worried about brain damage, I worried about her organs being damaged from so much Tylenol and Ibuprofen. It is usually in children a little older ,but my daughters started when she was 6 mths. (Usually peeked at 105.9 for 4 days .)After eight episodes and Dr's visits of constant blood work catheters and "oh its a virus" choruses, I took her to ER mainly to get second opinion and ask where to go ,when her pediatrician would not listen to me. I know this is not normal. They referred me either Infectious Disease or Auto Immune as a place to start. I choose Infectious Disease and the first words she said after studying her chart was this is not a virus. I could have hugged her just for saying that. She put her on Cimetidine-1ml x2 daily. It did not work, but I continued it anyway . The next step was predisone and I really did not want to expose her to steroids, even low doses every month as she grew up. I remember feeling so relieved because we had found the problem, after that the reality hit that this wasn't going away.I'm sure most of you know what a overwhelming feeling this is.I read every study I could get my eyes on about pfapa research. The percentage differed according to which study you read , but there was proof removing the tonsils was a possible cure. The ONLY CURE I had read about. I struggled and prayed very hard with the decision of asking for the surgery. I didn't have to , her Dr told me it was an option. She was also concerned at how high her fever got every time.She made me an appointment w/pediatric ear nose & throat. My oldest son said to me mom what if it doesn't work I know you , you will feel SO BAD for putting her through this. It was not by far a easy decision but I came to the conclusion that even if it did not work it was the only thing I could do. It was the only shot we had to really get rid of this horrible unexplained disease. We did the surgery in October (they took her tonsils and adenoids)......Thank GOD it worked. She has not had one fever since it has almost been 4 months now. I dont know if any of you are struggling with this decision or haven't heard of it but I strongly recommend you find a pediatric ear nose & throat who knows about this ASAP. It has changed our lives. I still check her forehead ,I still marvel that she hasn't had to deal with this . I have faith she will never again have too,and luckily she will never remember the surgery she was 16 mths old. There is hope! I wont say the recovery from surgery was easy but it WAS worth it. Good luck to all of you. Please consider this for your child , I know every situation is different and the choice is scary (believe me I know this) but it was the right choice for us.

Last edited by forbrown; 01-22-2010 at 07:57 AM.
Reason: adding important detail

Thank you so much for your story. I'm very hopeful that tonsillectomy will be a cure for my daughter, however, I'm not comfortable putting her through a painful surgery if we are not confident it will work. She has been having fevers for a year and my pediatrician just mentioned it might be PFAPA two weeks ago. Since then I've been reading everything including all medical journals I can find. Some reports say tonsillectomy has a high rate of success (90%), others say there is less success (50%) and still some say that tonsillectomy is not shown to be significant. I have read several parents on this message board who say it works. It is very hard to make a judgment call when it involves surgery.

We are going to see an ENT today (not pediatric). I have no idea if this doctor knows anything about PFAPA. A couple of questions for you...What doctors had you seen prior to surgery, and what were their feelings about tonsillectomy? Did your ENT have knowledge and experience with PFAPA? What information did you use to make the decision to have the tonsillectomy?

We are just at the beginning of this road and I have not met with any specialists yet. I feel like I know more than my pediatrician at this point. My daughter starts Kindergarten in the fall and I hope to find some answers before then.

Hi, my son has been suffering with recurrent fevers for about a year now. He has stomach pain, sore throats and high fevers and poor appetite. He is 8 now. I have seen every specialist you can think of. His ENT suggested a tonsillectomy and says it has a great success rate for complete remission. Going to consult with the rhumatologist again before we do it though. I just afraid it won't work and he'll have to go through all that for nothing. We have to do something though, he has missed 16 days of school so far this year and his reading is suffering and is falling behind. Let me know what you think.

Hi
My daughter is seventeen and has started having fevers again after 5 years.
(Interestingly she developed absence seizures during this time & was treated
and they stopped AND so did the fevers!!!! )
I have an appt with a rheumatologist in 4 months. Now that she is working
this is becoming difficult emotionally for her having fevers every 4 weeks
as well as time off work.
It does not seem that there has been much progress with this condition since she was little when I told her paediatrician about periodic fever syndrome
(I found it in a medical library)